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Changes in Parental Hopes for Seriously Ill Children
Douglas L Hill1, Pamela G Nathanson1, Karen W Carroll1
1Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Pediatrics
|March 24, 2018
Summary
Parental hopes for seriously ill children evolve over time, primarily focusing on quality of life, future well-being, and meaning. Regular communication with parents is crucial for understanding their changing hopes.
Area of Science:
- Pediatric Oncology
- Childhood Illness
- Parental Support
Background:
- Parental hopes are crucial for decision-making and coping in seriously ill children.
- Limited understanding exists regarding the temporal dynamics of parental hopes.
- This study addresses changes in parent hopes across various domains and time points.
Purpose of the Study:
- To describe changes in parental hopes over time in multiple domains.
- To examine parental hopes in a subgroup of parents whose child died.
- To explore the stability and change of hope domains over time.
Main Methods:
- A mixed-methods prospective cohort study design was employed.
- Parents of seriously ill children reported hopes at baseline and 20-month follow-up.
- Hopes were categorized into 9 domains, with changes tracked at 4-month intervals.
Main Results:
- Quality of life, physical body, future well-being, and medical care were the most common hope domains.
- Hope percentages increased over time for quality of life, future well-being, and broader meaning.
- Most parents reported changes in at least one hope domain over the study period.
Conclusions:
- Parental hopes for seriously ill children are dynamic and primarily centered around key areas.
- Clinicians should routinely inquire about parents' current hopes to provide tailored support.
- Understanding evolving hopes is vital for effective pediatric care and family coping.
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